Little miracles

Two years ago
Brian Smith
did not speak. He did not play with other kids. He could not sit still. He did flap his arms and stuff rocks and other objects in his mouth.�

Brian has autism. His parents worried that he would never learn to talk, much less succeed in school.

"Initially, my big goal was to get him to be a little more focused. Another goal was to have him not put things in his mouth," said his mother, Elda Smith. "We had several instances where he was choking and we had to do the Heimlich on him."

Brian is 5 now. On a recent day, he sat in front of a computer in the classroom of the Newtown Autistic Program and used special software to write a short sentence describing a photograph. The computer voice "read" his sentence through speakers. Brian tried hard to repeat the sounds.

Each of those steps is a tiny miracle for the angel-faced boy. Across western Connecticut and the rest of the country, there are thousands more miracles.

They come at a price.

Special Education: The cost of caring

First in a four-part series

TODAY

Federal mandates have forced public schools to offer a wide range of special education programs. That has driven up school budgets by millions

of dollars a year.

FRIDAY

There has been a staggering increase in the number of autistic children in recent years.

Newtown is one district with a program for students with the neurological disorder.

SATURDAY

A large number of special ed

programs focus on pre-school and early elementary age children.

SUNDAY

Many districts pay $1 million or more to place a handful of special ed students in special programs run by outside agencies.

Schools everywhere are dealing with a wave of autistic children. During the 1990s, the number of U.S. children with autism - a brain disorder that affects learning, communication and behavior - grew by an astounding 1,354 percent.

"In 1997, one in 2,500 children were identified with autism," said
Jane Loorman
, a New Milford special ed teacher whose class includes autistic children. "By 2004 one in 250 to 500 were identified with autism."

Both the cause of autism and the surge in cases is a mystery. But this much is known: the nation spends about $90 billion a year to help such children, according to the

Some of that burden is falling on Ridgefield, New Milford, Newtown and Danbury area schools, that are seeing more children with autism. Though autistic children were once considered almost unteachable, educators now eventually move many of them into regular classes. But it's a painstaking process that can first take years of nurturing in classrooms in which teachers and therapists often outnumber the students.

There is no magic bullet for helping autistic students. But there are theories. One teaching method is ABA, or applied behavioral analysis. The technique breaks down a skill into bite-sized pieces. Students master one step at a time, slowly building a foundation.

"This (autistic) program has a special ed teacher and a speech pathologist assigned to it along with all of these ABA therapists," said
Michael Regan
, director of pupil services for Newtown schools. "It is a very personnel-intensive program."

Newtown's 10 ABA specialists - specially trained teaching assistants - make $13 to $20.50 an hour, depending on training and experience. The teacher makes $82,000. A learning specialist with expertise in autism comes from Massachusetts several times a month for an annual cost of $20,000.

All told, Newtown spends $312,587 a year to educate 13 autistic students ages 4 to 8, or about $24,000 per student. That's nearly triple the $8,935 annual cost of educating the average Newtown student. The district spends more money on about a dozen other autistic children who are not in the formal program at
Middle Gate Elementary School
.

Learning to sit

Elda Smith first noticed something was different with her son when he was about 18 months old. Someone asked her if Brian ever cried or gestured when he wanted to be fed. Elda Smith realized that he never did. She simply watched the clock and kept track of Brian's feeding times.

As she thought about it, she realized there was no real communication at all between the boy and his family. "That was the first red flag that went up," Elda Smith said. A short time later Brian was diagnosed with autism. "As a parent, when you first get the diagnosis, it does take you aback," Smith said.

The symptoms of autism and related disorders differ from child to child. Some children are able to talk. Others are more withdrawn and have a hard time learning, communicating and interacting with the world around them.

Some children fixate on an object or a person. They might also do what is known as "stimming" - flapping their arms or hands or rocking back and forth. Brian did all these things when he started last school year in the autistic program at Middle Gate school.

Newtown combines ABA with other methods. Brian and five classmates in a morning class each receive individual attention from teacher
Gerald McClellan
, speech therapist
Lynda Codeghini
and, on a recent day, six ABA specialists.

When Brian first came to Middle Gate, he was too distracted by other things to sit in a chair and listen to a lesson. So learning to sit became one of the first lessons. If Brian sat when instructed for a set amount of time, he got a reward - a favorite food or play time with a favorite toy.

A specialist tracked Brian's progress. ABA works by using 10 or 20 trials of each task - that is, a child is asked to do the same thing, or to answer the same question, 10 or 20 times. The specialist marks every answer in a book. In general, teachers do not consider a task mastered until children do it right 80 percent of the time three days in a row.

Pictures and computers

The Newtown students receive most of their instruction at a series of work stations, which are just small tables in the classroom. On a recent day, a specialist read a children's book to a blond girl. The specialist asked the girl simple questions about the story and charted right and wrong answers.

Many autistic children can't speak, so they are taught other ways to communicate. In the Newtown classroom, each student has a picture chart on the wall with the day's activities. At snack time, students take a small laminated drawing that represents snacks and place it on the chart. Eventually they learn to verbalize the words represented by the pictures.

Brian's has made great progress in the past two months after he began to use a computer program called "PixWriter." Children with autism tend to have trouble following a teacher's verbal instructions and need to see things to understand them. On a recent day, Brian's specialist,
Lisa Doersch
, showed him a picture of a girl sitting under a table.

Brian looked at a computer screen filled with many small pictures. He then clicked the pictures that described the photo. The computer speakers sounded each word it. In the end, Brian made a sentence. The computer spoke: "The � girl � is � under � the � table."

Doersch asked Brian to read the sentence. His speech was muted, his words almost gargled, but he could be understood.

Doersch said introducing "PixWriter" to Brian was like putting a key in a locked door. "Once we implemented programs on the computer and he started typing things, all of a sudden it just clicked in and he got it," Doersch said.

Brian clearly enjoys his work on the computer. He easily switches from one program to another. He seems to have a natural curiosity - his big brown eyes seem to absorb everything around him.

"This year we've seen major improvements," Elda Smith, his mother, said. "I didn't think he was ever going to be able to talk."

Connecting with peers

Three children in the Middle Gate autism program are rarely in the specialized class. Accompanied by an ABA specialist, the children attend regular classes and do academic work.

As recently as the 1980s, it was nearly unheard of for an autistic child to be in a regular class. They were often sent to special private schools or institutions. Teaching methods weren't refined and many children made little improvement. Then educators found that the social skills of autistic kids greatly improve when they mix with regular classmates.

"One of the hallmarks of autism is that sense of isolation that these kids have," said Regan, the Newtown pupil services director. "By getting them into the regular ed settings, we're trying to get them more connected. The only way to get them connected is to get them with their other peers. That is the real goal."

Still, Regan and others are realistic. Some children have severe autism and will always need a lot of special attention. "We don't promise a cure," he said. "We want them to have a life as independent as we can possibly make them."

Brian still spends his entire school day in the autism program because he exhibits some classic autistic behaviors.

After working on the computer, Brian and his classmates gathered to sing a song and talk about the days of the week. Brian was distracted. He kept craning his neck while looking for a certain ABA specialist. He got up and looked behind a bookshelf for the specialist. Finally, the specialist slipped out of the room and Brian began to pay attention to the lesson.

His education doesn't stop at the end of the school day. Specialists come to Brian's house four times a week to work on "life skills" - everything from putting on pants to brushing teeth to behaving in public.

When the specialists aren't there, Elda Smith takes over. It's important for parents of autistic children to reinforce skills learned in school. "You have to break down every skill you are trying to work into subsets," Smith said. "For example, getting dressed may be broken down into a dozen steps, just to put on a pair of pants."

The progress is slow. Elda Smith knows her son has a long way to go. She is grateful for the help of all the teachers and staff members at Middle Gate.

"You have to be able to sustain yourself and your family for the long run," Smith said. "You do get a little battle weary. That's why it helps to have other people to talk to."